My fellow hEDS patient, long-suffering GP Dr. Emma Reinhold busted her hump and rolled out a wonderful EDS Toolkit for General Practitioners in May 2018 hosted by the Royal College of General Practitioners in London. (I’m humbled to be one of the patient contributors she tapped along with several expert doctors!)
Although it’s by doctors and primarily intended for doctors, it is available free to anyone anywhere in the world with internet access. (Please share with your doctors!)
And yet, and yet, we are still not getting diagnosed much more often than we were before this, when we used to speak of just six main types of EDS.
The hypermobile type (aka hEDS) still remains the most common by far, and yet the most easily missed, along with the new Hypermobility Spectrum Disorders. These two combined are thought to comprise over 3% of the general population now: far from rare! Just rarely recognized yet, alas. (NB The HSDs and hEDS now obsolete all the old diagnoses and terms of JHS, BJHS and HMS which now fall under this new umbrella.)
I hear from patients daily on Facebook and Twitter who share this information with their doctors, and yet still get quickly and firmly dismissed with a wave of the hand and a hint at a psychological disorder despite exhibiting more than enough signs and symptoms of a connective tissue disorder.
And this is not to even speak of the many comorbidities which are even more rarely diagnosed in most cases, especially POTS and any form of MCAD. Most with these are written off as having anxiety disorders, sigh.
This is why I want to start calling this Gaslighting Syndrome, seriously. Because both a lot of our families and most doctors are still actively dismissing and invalidating our experience, despite all this improved universally rolled out diagnostic information and criteria.
Where did the term “gaslighting” come from, anyway? Well… the original reference is to a classic American movie from the 1940’s based on the 1938 play “Gaslight” by Patrick Hamilton. From Wikipedia:
“The term originates in the systematic psychological manipulation of a victim by her husband in the 1938 stage play Gaslight, known as Angel Street in the United States, and the film adaptations released in 1940 and 1944. In the story, a husband attempts to convince his wife and others that she is insane by manipulating small elements of their environment and insisting that she is mistaken, remembering things incorrectly, or delusional when she points out these changes.”
Turns out, the husband was a murderer, and she was quite right to be suspicious!
In other words, it’s a concerted effort by one party to dismiss and invalidate another party’s lived experience, despite plenty of evidence supporting the latter, and plenty of loud protestations and assertive requests by the target (patient in our case).
This technique is commonly employed by narcissists and sociopaths (or malignant narcissists) to keep their targets off balance and unable to successfully call them out. (And thus coming back for more abuse.)
Which is what happens all too often to undiagnosed HSD and EDS patients both in their own families, and myriad medical doctor’s offices inadvertently or otherwise.
In these caring but under-informed doctors’ defense, they may only know about or remember the grossest signs of the rarest types of all of the myriad connective tissue disorders. We may need to find another term for this, but the effect on the patient is still the same: their experience is invalidated and dismissed once again.
The same goes for some of our family members who either don’t realize or can’t manage to realize that what they are observing in the family is not “normal”. That is: being surrounded by fellow hypermobile (bendy) people with lots of joint problems and other issues, they consider this to be normal, and so not worth talking up.
This was the case in my family. I had to go from walking to wheelchair in 3 weeks 7 years ago now (January 2019 as I write this) to get diagnosed with anything but depression and CFS. (No, depression doesn’t split your sacro-iliac joint, or take out your fingers, ribs and toes! I’m still dragging my right leg a bit, but I digress.)
Yet, some doctors and family members ARE narcissists, and will not listen to anyone or anything else once they’ve made up their minds. One of the worst I’ve seen is actually quite hypermobile himself. (Even more so than I.) I see story after story in my support groups on and off-line of patients being invalidated and dismissed despite plenty of actual evidence of a serious problem. “Oh everyone does that!” some say, sigh. No, they don’t.
Sadly, the narcissistic doctors seem loathe to even consider a connective tissue disorder as a working diagnosis precisely because patients can present with what looks like high anxiety that is often physiologically driven. They seem very happy to write us off as head cases despite plenty of very real, sometimes life-threatening signs and symptoms. (Mild low-level anaphylaxis anyone? Dysautonomia, or POTS?.) And yes, patients are bringing in the latest and greatest information. But they keep being… dismissed. (It’s seriously almost epidemic.)
The recently recognized Mast Cell Activation Syndrome that often accompanies any form of HSD or EDS (especially the most common form, hEDS) is even harder to prove: the biomarkers (elevated mast cell mediators in blood or urine) are exceedingly hard to capture, even in the sickest patients. Many times it’s due to mishandling by a lab (prostaglandin D2 disappears within 2 minutes at room temperature), and a patient will be written off once again.
One friend of mine only realized later what they thought was her baseline tryptase level for instance was actually a constantly flared state she was finding herself in due to her new home environment. No wonder her tryptase never elevated! It already was constantly elevated for her.
The sad thing is, we could be saving thousands if not millions of dollars in needless testing for the wrong things and doctor shopping if doctors would just stop considering these conditions rare, or resorting to psychologizing patients when they can’t find easy answers. Trust me, we share your frustration.
But every single patient I know has agreed they’d be far happier to hear a doctor honestly admit they do not fully know what is wrong, than to just write off the patient or worse: mislabel them in their chart with an incorrect and harmful psychological diagnosis. This latter has proven especially true for autistic patients, who are often also hypermobile, and so get twice the gaslighting experience. Is it any wonder medical PTSD is so prevalent among us?
We know most doctors aren’t trying to harm us, and even the narcissists seriously think they’re helping even still. (God complexes anyone?) But we would all do better if everyone, doctors, patients, friends and family would just plain listen to us and take us seriously – just for once!
I’m increasingly convinced that they newly recognized Hypermobility Spectrum Disorders are one of the best kept secret epidemics ever not known, and will soon emerge on the medical scene as slowly, one by one, we train up one doctor and caregiver at a time. You heard it here first, folks! (I joke that the CDC is going to come test the water in Oregon any day, as I continually spread awareness out here.)
Thank you to ALL of our carers, family, friends and practitioners of all kinds who DO believe and support us on our painful diagnostic journeys! And big thanks to the many doctors who get us after we’ve been through the mill, ground up and spat out in shreds, leaving us near tears in your offices with foot thick charts and a virtual alphabet soup of labels attached.
I know we are complex patients, and you’d like to have easy answers. (Check out the EDS Toolkit for a few!) But we appreciate you doing what ever you can for us and forgive you for not knowing everything.
Truly, we just need someone in our corner so to speak, even if we can’t solve or cure any of this. There is supportive therapy for all of these conditions that can lend to happier and healthier lives like my friend in California has found for herself. A little hope – and supportive therapy – can go a long way!